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Project Details

Quality of Life with Epilepsy

Project Summary: 

This study evaluated quality of life in people with epilepsy in the San Francisco Bay Area, using focus groups and the QOLIE-31-P survey instrument. Eight focus groups were conducted to examine self-reported challenges due to epilepsy. Participants attended focus groups based on use of support groups and primary language spoken.

Main Findings: 

The findings indicated substantial challenges due to epilepsy, in particular physical and psychosocial functioning, and financial difficulties. Also, limited knowledge about services and relatively negative feelings toward self were common among Cantonese-speaking and newly diagnosed participants. Many of the issues surrounding QOL and challenges were shared across groups. Epilepsy-related social services appeared to be useful in helping people cope and increasing awareness of services.

Policy, Practice or Research Impacts: 

Further research is needed to better understand why some patients choose to participate in support groups while others do not. Additionally, more information about people with epilepsy, particularly Asian Americans with epilepsy, is needed in the research literature to better understand this community’s service needs.

Project Type: 
Contact Person: 
Susan Ivey
Contact Person's Email Address:
Health Research for Action, UC Berkeley
Principal Investigators: 
Professor Susan L. Ivey, MD, MHSA
Staff and volunteers at the UCSF Epilepsy Center; Asian Health Services, Oakland, CA; California Pacific Medical Center, San Francisco, CA; Epilepsy Foundation of Northern California; Dr. Daniel H. Lowenstein, MD, MS.
Mr. Dong Chung, Mrs. Hui-Zhen Feng, and Mr. Raymond Chung of Arcadia, CA; Health Research for Action, Academic Opportunity Fund and Public Service Fund of the Associated Students of the University of California, and Undergraduate Research Apprenticeship